Assorted things I’ve meant to say, from the other side of the usual time-barrier.

Standard

It’s happened again. My brain, without my consent or approval, periodically divides time into chunks. I woke up this morning and felt as if anything that happened before today — even yesterday — might have been weeks ago, somewhere off in the distance at any rate. This usually happens to me sometime after stressful events, I imagine it’s some sort of cognitive partitioning thing. It’s heavily disorienting, though, when it does happen. Everything gets divided up into some kind of “before,” and then now. And “before” is a long way before, even if it’s only a few minutes before the dividing line. This happens to me after major meetings, after conferences, after giving speeches, after medical emergencies, and apparently after television appearances.

But it leaves me in a strange position. I’ve been trying, I know, to write up a description of how various events happened. Now they feel like they happened a long time ago, or like they’re on the other side of a wall I can’t cross. I know from experience that in several weeks time (possibly sooner), I will find it easier to remember them, but the memories will also be less detailed than they had been before.

And so I am sitting here, almost as if those things haven’t happened, except I now have a lot of new readers to my blog, most of them with questions, many of which I can’t answer, because I don’t know them or their children. And some of which I don’t want to answer yet because I tend to prefer getting to know people rather than becoming what I used to call a “dispensing machine,” in which people select the right questions and I spit out answers, but there’s no reciprocity involved. Strange how when I know someone I don’t mind answering them, but when I don’t know them it seems invasive. Or maybe not strange. It’s hard to know when you’re part of a category of people who are expected to answer detailed questions about ourselves on a regular basis, in a way that most people are not.

My television appearance has caused several opinions to sprout up that I find equally confusing. One is that I automatically represent people’s children, and will automatically understand their children, even if I’ve never met their children, don’t know their children, don’t have a lot in common with some of their children, etc. Another is that I am too “high functioning” to be shown on TV, because obviously I’m supposed to represent everyone, and I clearly don’t represent certain people. Another is that I am too “low functioning” to be shown on TV, for equal and opposite reasons. Another is that I have too many unusual traits as an autistic person to be shown on TV. Etc.

And it’s strange to see how my story has been packaged. By other people. Because I do my best to tell it to them as it was (within the limits of time and words and language skills), and they pick the parts they find most relevant and run with them. Many of them don’t even do it on purpose, but distortions creep in. Then I’m displayed to the world in all my distorted packaging and people see some of the distortions before they see the person. Then they speak to me as if I am these distortions, and I don’t know how to break it to them who I really am, or what I’m really about. That becomes magnified to the nth degree when it happens on international television. I don’t know how real celebrities stand it.

My first reaction on seeing the CNN show was that I didn’t belong there. My face didn’t belong across the back of a newsroom. I didn’t belong on a television set. I belonged in real life. (Where I was, right then, trying unsuccessfully to hide behind my friend’s bird cage.) It didn’t seem real, and it didn’t seem right. I was sitting in my friend’s bedroom watching her TV, and we were one room away from where half the interviews had taken place, I could see where the interviews had taken place, and I could see them taking place on TV, and I was there on TV and I wasn’t there in the next room, and that sort of thing totally disoriented me. Since I saw myself in that room on the TV I kept expecting to peer around the corner and see myself in the next room, except here I was sitting in this room, and it felt like there were altogether too many of me to keep track of. I wanted to pull the other me off of the television set and get rid of her, because there only needed to be one me and I was already here. I started hitting myself in the shoulder to remind myself I existed where I was and not in the TV.

My friend was trying to tell me they’d actually done a better job than she expected, and that it wasn’t too awful, but it wasn’t all that reassuring at the time. I did notice that on both nights, they were reasonably good at capturing a confusing and complex language history within sound-bite length, although they left out the trouble I had when I was very young. They left in the head-banging, which I’d asked them to remove but they said they didn’t have editorial control over it. For anyone still wondering, I didn’t bang my head because I’m intelligent and trapped (which isn’t a construct I use for viewing myself), I banged my head because I was extremely stressed out by the whole thing and then a typo I made was the last straw. And I only did it for a short time, and it was the first time in months I’d done it. (I used to do it all the time, but I’ve gained a lot of control since then.)

And the whole time I looked a lot more autistic than usual (I don’t know any other way to put it) because I was so terrified of having cameras and reporters following me around all day. I was afraid of that. Laura kept telling me that it’s internalized disability oppression or something, that I shouldn’t mind looking like that. But I really am more animated than that most of the time. I look like that during high-stress meetings with caseworkers and such, and I guess my brain processed this as a high-stress meeting. I kept trying to will myself into something more animated and it just wouldn’t happen, fear had near-total control over my movements. And I knew, very distinctly, that people see you for a minute and think this is how you look all the time. If I’d been more animated, people would’ve thought that’s how I look all the time, and would’ve found it really weird to watch me as I looked on the CNN thing. As it was, I bet people would find my usual appearance the weird thing.

Fluctuations aren’t part of most people’s heuristics for understanding a person. The idea that I might move differently at different times, and have different unusual movements at different times, doesn’t cross some people’s minds, at all, and I’ve paid the price in the past of the assumption that five minutes or so of watching me move on a particular day in a particular situation is the totality of what I look like. So I was super-self-conscious.

The same thing was a problem during the second interview, in a way. I was fully aware that my responses to questions when “put on the spot” would be considered more “real” than my responses to questions when I had time to think. Some of the questions were really hard, because they involved juggling the words of the person, and juggling the words to respond, and somewhere in there I had to actually figure out how to insert the thoughts and memories into the right places.

There was one question in particular, about a woman I met at AutCom. She and I had said hi in an autie way and it was great. I gave it as an example of autistic communication, because it’s such a great example. She had circled my table, I had timed my rocking a little different, and in that way we acknowledged each other’s presence. But he wanted to know why I hadn’t just waved or something. And it’s something I’d never thought about. I mean, it’s like asking a non-autistic person, “Why didn’t you just thumb your nose at her to say hello?” It wouldn’t occur to someone. And I didn’t have the time to think my way back into the sensory experience of the situation at first, so I was spouting off answers to him, but only in the end gave a partial answer that wasn’t used after the editing, but closest to the reality of the situation:

We were both in a crowded hotel ballroom, in a chaotic and unfamiliar environment, and as I recall my body was busy moving every single part of itself as well as making grinding noises in its throat in order to comprehend what was around me. I could only type one-fingered in that environment, and I certainly wasn’t going to be able to lift up an arm and wave. And that’s even if I had thought to, which frankly I didn’t. That sort of thing doesn’t occur to me at random, and it certainly doesn’t occur to me when I already have a better communication method in place. It would be out of place, intrusive, invasive, and wrong, not just potentially invasive to her, but invasive to me, because I was already using my hands to flick around to try to control the chaos. (Chaos which had caused my first action upon entering the hotel — where there was a conference, three weddings, a bar mitzvah, and a Lions Club gathering taking place — to be freezing in place and then vomiting. I had to be using every single bit of me for its own purposes to regulate my senses, and even typing was difficult in that environment.) Moreover, often when I try to wave while concentrating on everything else, what happens is my hand goes up partially and then hits my chair really hard, which in turn looks kind of aggressive.

But in my response, I only managed to flail at that answer from several angles, I couldn’t figure out how to capture the entirety of an autistic perceptual system and all its differentness in a few sentences. And I was painfully aware of that when I saw it air on the television set. Plus, by the time I was answering Dr. Gupta’s questions, I was so tired that I really needed to be lying down, not sitting up, if I wanted to think. But the camera couldn’t handle me lying down, so I had to sit up, and it definitely made it harder to understand things. When I went to lie down afterwards, I felt like I could give a better interview, but the camera by then was turned off and being packed up to take it down the hall.

In the middle of the disorientation and discomfort following the first broadcast, I started getting questions. I was supposed to answer the ones CNN gave me the next day. I have a really hard time answering some of the simplest questions at times. I plowed through the questions on adrenaline and then caffeine, and hoped my answers were good enough. I got them in five minutes before the deadline. All of this had taken me well off of my comfortable territory. And then my blog was taken up with questions from strangers, many of them clearly questions of the sort that would set off a long game of assumption ping-pong. I was really glad to see andreashettle and n. start pointing people to answers within the blog.

Plus I was getting some creepy people. One guy gave me his home address and said he wanted a girlfriend. A few people were putting me on the kind of spiritual pedestal that actually demeans my real spiritual life by reducing it to a thing about a person instead of a thing about God. Some people were actually saying I should pray for healing from autism, when actually I think God made me autistic (and made other people non-autistic, and that’s fine too) and that I don’t need to be healed from something I’m supposed to be. And many people were asking me questions that I am fairly certain people don’t normally ask total strangers. I had no internal template for responding to any of this so I just ignored it, but with growing unease.

And in all this I paid mostly attention to the people I already knew. Somehow that seemed, and still in many ways seems, safer. Because they know who I am, they know more about me than I’ve ever put on the web or on TV. I’m really glad also for people like Jerry Newport and Donna Williams and Laura Tisoncik, who’ve all seen their share of publicity, writing to me about how to handle this stuff. Not all of us have always gotten along or agreed on everything but they get how weird and scary this is.

Laura told me there’s two major bad ways to respond to publicity, which are really two parts of the same thing. One of them is to seek it out for its own sake, and to do things specifically in order to get it. The other is to avoid it because it’s uncomfortable and you don’t want it, and to do things specifically in order not to get it. In both cases you’re acting on your desire for, or lack of desire for, publicity, and not on your desire to do the right thing. CNN is asking me about other things to do, and I’m still considering them, I haven’t had the chance to let my mind settle enough to know what is the right thing to do. Not the least or the most publicity-getting thing to do, but the right thing taking the whole situation into account. I’m still thinking, I still need to discuss it with people I trust.

Another odd aspect of some of the responses is the idea that autistic people walk right off the pages of textbooks. We don’t. We’re regular people, with regular, messy lives. We don’t fit into tidy categories. If ever a group of people didn’t read the rulebook when being born, it’s us. Many of us have additional things going on besides being autistic. Michelle Dawson has a visual impairment, Sharisa Kochmeister has CP, Gunilla Gerland and Donna Williams come from unstable families, Thomas McKean has a fantasy world and hears voices, Gunilla Gerland and Jerry and Mary Newport have all done drugs of some kind at some point, Dawn Prince-Hughes was an exotic dancer, Jim Sinclair is intersexed, Jeanette Purkis was involved in crime and at one point diagnosed with a personality disorder, Donna Williams and Thomas McKean and Adriana Rocha and a number of others have talked about experiences that most people would consider paranormal, Georgiana Thomas saw demons when she was younger that vanished when she became a Christian, Adriana Rocha thinks she’s the reincarnation of John the Baptist, Jerry and Mary Newport as well as Donna Williams have savant skills, Sue Rubin has Noonan’s syndrome, Kassiane Sibley has Rett’s syndrome, Jim Sinclair and Laura Tisoncik use wheelchairs, Jim Sinclair and Mary Newport have both talked about losing various skills at certain ages older than the usual so-called “regression” age, Sondra Williams and Jerry and Mary Newport and Liane Holliday-Willey and Donna Williams and Dawn Prince-Hughes are all in marriages or committed relationships and some of them have children, Liane Holliday-Willey and some others can fake normalcy enough to pass, Donna Williams and some others have had personas they used in order to pass, many of them had prior misdiagnoses of mental retardation or schizophrenia or personality disorders, and so on and so on and so forth.

Yet all of us are autistic. Being non-stereotypical, or having other things going on, or having unusual beliefs, or life experiences that are unusual for autistic people, and so on and so forth, is just the variety of having a real life and not something pulled out of a textbook. I have heard each of the above authors blasted at various times for the characteristics I listed, either because they were not fitting a stereotype, or because they were fitting a stereotype, or because they could “lead to confusion between autism and other things” just by existing, or because by having abusive families they’d further the refrigerator parent idea, and so on and so forth. I have also heard them told they’re not autistic because they have some of these characteristics.

But the reality is, autistic people are not uniform in the least bit. We have large numbers of significant things in common (some more than others, and what we have in common with each other may vary, but there’s enough in common to legitimately share a label generally), but they are not things that would prevent all these other things from going on in our lives. Our lives are not taken out of textbooks. We do not live according to broken rules someone has invented for how autistic people’s lives should go. We live in the same messy reality everyone else does. The one thing autistic people all seem to have in common, is that we don’t read some rulebook when we’re born that says “Here, you are autistic, therefore you must do things this one way that is delineated by various textbooks about autism.”

All of this variation does not mean that we can’t make statements about our rights, though. We just have to take everyone into account. I am never going to say that some people belong in institutions because they have severe self-injury. I am going to look at how my society shuts certain kinds of people with severe self-injury in institutions (“certain kinds”, because we do not do this to chain smokers generally), why that is considered protective, why this is considered okay, and how a person with severe self-injury can live outside institutions, preferably without being tortured. (I even have a vested interest in that one, having at one point banged my head often and hard enough to do damage and far more often than the standard criteria for severe head-banging. And I have no desire to ever live in an institution again even if I do that.) Some people would say that opposing institutions leaves out people with severe self-injury, but I would totally disagree with that.

And I simply can’t understand the attitude that says “Don’t show this one person on TV, they’re not representative.” Who is? And who says that when we appear on TV, it’s to be representative in every way of every autistic person? Might it not be because we have ideas that are important to the world, independent of our particular medical labels? (And some of the labels that were used on the broadcast are not terms I would use for myself, for that matter.)

And something Donna Williams said once, I want to add in here too:

I used to be intense about precision. The media knocked that out of me. The way I am talked of, advertised, packaged, pulled apart, even heralded and praised, has taught me to give in about my insistence others must be precise in their representations of me. All I need to know is that I know me… and maybe those most personal and closest to me. But I had to learn to let them see me through their eyes, their feelings, their structures too. Anyway, the more strangers describe me through their own baggage or are way off mark from who I am or how I work, the more they have helped me to dearly value those close to me… and that was something I was very aloof about before. So I thank those who ever portrayed me wrong. You helped me immensely. What can make us crumble, can often also make us more whole… its a matter of focus- self as a victim of crappy experiences versus crappy experiences as an indicator of what’s needed or how great other stuff is by contrast.

Gossip isn’t you and it isn’t yours unless you created it directly by your own hand. If it’s not yours, you can’t control it and time is worth everything. Change what you can but also learn that giving up isn’t giving in. Learn to say ’so what’, ’so bloody what’… then get on with it.

I did get responses from people who knew me. Both my brothers called. So did my parents. My great-uncle was proud and said I look like an Oleson. My grandparents were happy. My neighbor down the street growing up said “That’s our Amanda.” My brother’s ex-girlfriend, who’d lived with us when I was a kid, talked to my mom about playing with me and stuff when I was little. Responses from people who’d known me most of my life meant a lot.

I don’t even know if this post has been coherent. These are various thoughts that have been swirling around my head since it happened, and I think now that I’m on the other side of that time-barrier in my head I can step back and write about a few of them (even though things seem like blank empty space to me on the other side of the barrier). I hope it’s made at least some sense, and I apologize for all the rambliness. This is what happens when I try to write something like this while sick and time-disoriented.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

76 responses »

  1. I once read somewhere not too long ago that autism is one of the most staggeringly heterogeneous conditions known to man.

    Of course you wouldn’t necessarily have anything in common with anyone’s particular children because you’re an adult for starters.

    If someone is trying to find a “typical” autistic they obviously can’t do it because there is no such thing.

    Yes, you may be too high functioning to demonstrate certain points and too low functioning to demonstrate certain others.

    However, and I mean this absolutely sincerely, of all the individuals I have ever communicated with who are touched by the condition, you are arguably the best one to get a conversation started.

    And your appearance on CNN certainly got some conversations started.

  2. I find that I need to categorise things in order to understand it better. For instance, music: it is easier to learn about the broader categories of music first (Baroque, Classical, Romantic, Jazz etc). Then you get to know the composers better, and you can group them into subcategories (the Romantic composers can go, say, into early Romantics, late Romantics, turn of the century Romantics etc.) And then, one day, you find that you really know your stuff and your music: really, really well. You can recognise pieces, you know styles, you can even recognise which orchestra is playing, perhaps even a famous recording. Then, you suddenly realise that there is no way that two composers can be anywhere the same. Even if they were categorised into the smallest compartment together, they ended up being completely different. But you needed to go through the categorising exercise because if you had to start viewing them all as completely different with nothing in common at the start, you might have ended up overwhelmed and giving up because of information overload.

    With regards to autism, I see all these symptoms and classifications and definitions, but I now also see you, complete apart from all those boxes. I see an individual that is completely unique and can not be “boxed”, just like I, myself, and everyone else, can not be similar to anyone, once you really, really get to know us. Yes, we have similarities maybe (I also like to make videos, I also love to type rather than write) but we both have enough unique qualities to warrant our own space.

    However, I needed to know about the broader categorisations of autism first, as I knew so little about it and if I didn’t have a broad interest in it, I would have never ended up on this site and gotten to know you, whether autistic or not. In fact, had I been looking for someone that also suffers from migraines, that could have been my entry point into your blog, and then that would have been your initial “box” for me. But now, you are just you, a great person, and I hope that is how the press and people around you will see you also.

    And now I hope this comment has been coherent and not too long.

  3. I didn’t catch all of both segments, but I saw enough to say that, despite the discomfort you report, you came across clearly. And, while I don’t recall the specifics, I remember thinking that your answer about the “hello” at the Autism Conference made perfect sense.

    One thing that I noticed in your interview was an effect of your use of your keyboard-to-speech tool (sorry, I don’t remember what that’s called). Your sentences tend to be structured around complex thoughts, rather than around the amount of breath available at any given moment in a conversation. The result can seem a little odd in that the voice of your keyboard doesn’t stop at points where one might otherwise pause for breath.

    I don’t mean this as a criticism. I just found it interesting to “hear” a conversation that included complex sentences and fully complete thoughts without the ubiquitous “umms” and “likes” and “y’knows” that many folks use as punctuation.

    I guess your interview was what all conversations might sound like if we were brave enough to pause and think through our thoughts completely before speaking.

  4. not to play w semantics, but i think you represent a lot of people in the political(?) sense (speak UP for them and their rights), while not representing them in the literal sense of being exactly what others are, or being able to “speak FOR people” to explain exactly what others mean/feel/experience or especially representing in a symbolic sense, because you are one real person and other people are other real people.

    but i think, like, in the places where you say something like “i am saying this about human rights, but from an autistic perspective because i am autistic”, you represent (again in maybe a sense of “speak up for”) a lot of other people that are not you, and that may or may not be autistic.

    Without actually being able to EXPLAIN all other autistics (etc).

    uf, talk about rambling(!)

    well, glad to see you writing again, but hope you are still resting enough too.

  5. PS: that is odd (to me) what Mike said above, because i remember that part and while it made some sense i could tell just from the shape of the language, maybe, that you didn’t get to explain properly. if i remember right, it seemed like the reality you wanted to tell about, was either way more complicated or way more simple than the words that came out. i guess in truth it was both(!)

  6. After a stressful situation, it is hard not to rethink or second guess what we could have said or should have said. Being on national TV would be one of the most stressful scenarios I could ever imagine. I think that I would have appeared like “a deer in headlights”, and would be shaking and unable to think clearly. You did so very well. Best of all, you have opened the door for discussion on a very complicated subject. I know, from what you have shared, that this has been a difficult time for you. Take care.

  7. Your writing style is such that I can read it to the end even when you do ramble. When “I” ramble, I get “TL;DR” or “what was that?”. Aphasia for me isn’t just the vocal part but the written part too. I do best when I’m concise. You don’t need to worry I think as much. Nonetheless, there are times when I don’t know that I will ever relate to various descriptions, others I relate to too well…(and yet no one else comments on those).

    Your description of the variety of autistics was most fun of all to read. I’m yet another that has a life that seems a long “bit vector” of things I am and am not. Perhaps why there is such thing as the AS code with it’s + and – stuff. That code is kinda genius thinking about it and thinking about that list.

  8. Amanda, don’t be so hard on yourself! Even for NTs, being interviewed for TV is a nerve-wracking process. And then watching the results on CNN, well, CNN is what it is. You held up your own very well against being an “object”, their “breakthrough story.” To sum up the news stories I would say, you showed the average ignorant American a glimpse into an autistic world. Your point was clear that you are an individual. Just that is very important in and of itself. Even the tiniest bit of light shining on the topic is good.

  9. I actually do often add the “likes” in while typing, and might even have done so during parts of the interview that were cut out (remember this was a really long interview, two interviews actually that were each very long, most of what they filmed did not get used). I used a lot more of them while speaking, though. One of the most humiliating experiences I had with a teacher, was a teacher who insisted that “like” was a sign that you were uneducated and lazy, and would not allow me to speak unless I didn’t say it. It vastly reduced the amount of things I could say. But she thought it was wonderful, she thought she was “making me think,” instead of the reality, which was that she was making me struggle much more for words.

  10. Rosemary: I actually was shaking throughout the entire second interview (the one that actually had Dr. Gupta at it — the first interview was with a reporter named Chris). I am not sure how visible it was on camera, but it was very visible (and somewhat audible) to people in the room.

  11. Amanda, I would never go *that* far on the issue of “like” and “you know,” but I find myself very conscious of them in my speech. I try to slow my talking down to the pace of my thinking. My goal is to present myself vocally much as I come across in written words. (I hope that is a good thing)

    From what I saw, the shaking didn’t come across in your interview. And I agree with others commenting here that any of us would be shaking like a leaf in a similar “TV interview” situation. When I’m interviewed by local, small-time radio and TV, I often lose my breath and sound like I’ve just run a mile. Nerves.

  12. Hi Amanda:

    I hope I am not one of the people causing you stress over the CNN appearance. I used the CNN “Ask Amanda a question” thing -just ignore that if you get it. Then I tried to locate your e-mail address and may have through a posting on this site from way back. But when I Google your name, one entry says you have a new e-mail address. I sent you an e-mail yesterday at the first address I found. I am not all that familiar with internet protocol (just someone’s Mom, Aunt, Grandma)so if I shouldn’t be putting this here – sorry!

    When and if you want to, I wanted to ask you a bit about your stopping meds and if you became very ill or whatever. As you know, the doctors all dispense copious advice about the dangers of discontinuing any of their prescribed medications. I have been campaigning to get my nephew, Ernie’s, meds reduced – 4 anti-seizure, and 2 behavior. I maintain that a few seizures a year do not warrant 4 seizure meds, nor is he a psychotic criminal who needs to be controlled by behavior meds because he flaps his hands around a bit and taps the wall and talks loudly sometimes. I am preparing a chart of seizure activity and med changes to show that it may be the additional meds that are escalating the seizures.

    If I continue to anger the neurologist with my repeated letters and quetions, he may not want to treat Ernie at all. If he doesn’t treat Ernie, the group home he is in will not want to care for him. I had to fight to get him into a group home in the city I live in; prior to this he spent 27 years in an institution.The average person would faint if they saw the list of medications he was subjected to in that hellhole. I live in Canada and can’t seem to find an organization or website where I can talk to someone about this.

    I don’t mean to pry into your personal business asking about your meds. Their were two other people in my family who told us what it felt like to be on the seizure meds – neither is alive any more. I wish they had left some written testimony; something I could show the specialists. I know they think I am exaggerating to get my own way with med reduction for Ernie. Why would I do that? I am not a control freak, nor do I think I know more about medications than they do.

    I know everyone is different(who doesn’t?)and the neurologist and psychiatrist will reiterate that to me and say your experiences are unique to you blah, blah, blah. When drug trials are done, they are done on a set of unique individuals and the results are applied to the general population,so why can’t a set of unique individuals (say, a group of autistic people or people with seizures) get together and compile a list of their findings and their results be applied to the general population?

    Thank you for listening – didn’t mean to talk so long – but it isn’t easy to say any of this in one or two sentences. On the flip side, it is a beautiful day today: the sun is shining, the snow is melting – the cats are sleeping. I hope you will start to feel better soon. Please do not feel pressured to answer me if you don’t want to.

    Kathy P.

  13. Nobody would expect a non autistic person to be just like another non autistic person. It’s presumed that despite some similarities there’ll be an awful lot of differences.So why on earth don’t people realise that all autistic people are different, with differing personalities, differing likes and dislikes. Even in the same family no two are alike.

  14. A similar thing I’ve experienced has pertained to being a gay person. I think some sort of nervousness emerges when difference comes into the picture. I’ll talk to a straight person who, in any other situation, would have the common sense to realize that what he was saying to me was completely ridiculous. I have to then remind him to pay attention to his common sense, because all of the reasonable knowledge he has acquired over the course of his life seems to have gone out the window. No, I don’t know how you can work out that problem you’re having with your gay cousin – I’ve never met her. No, I don’t know why a given gay person has performed a certain action – I wasn’t there. It takes a lot of patience and personal strength, and you have to decide how you’re going to approach it.

  15. As some of your other comment-leavers I fear I might be one of your new readers who is causing you stress. I must apologize for making you feel as if you have to speak on behalf of people who you never know. Even those without autism know what that can feel like, and please know it was not conscious. On the other hand, I do hope you can understand how so many of us feel at a loss as to how to help or connect with those with autism. Given that there is some level of connection, however impersonal via this blog, I think many of us are thrilled at the prospect of asking you for general answers about how to interact better.

    I was wondering, you mentioned your head-banging as a result of being stressed. I was wondering if this drive is similar to when I get overwhelmed and just clench up. What kind of release does head-banging give you?

  16. Dear Ballastexistenz,

    “…I don’t need to be healed from something I’m supposed to be.” It has been a very rewarding experience to get to know you through your words and videos. (So there is some redemption for words, chiefly that they are the architecture of the internet).

    Yeah… my memory has a lot of trouble with its temporal categorizations. It is very difficult for me to date a memory, unless there is an element in the memory itself that can date it. I do not mean that I can’t tell if a memory was four or five years ago, I mean that sometimes it is difficult for me to remember whether something happend yesterday, today, or a week ago. Perhaps you may understand what I mean by this.

    I have three very direct questions for you (since you seem to so enjoy questions…)

    1. I very much enjoy reading your journal… does it bother you that I, a complete stranger, read your journal?

    2. If number one (I actually wrote that “number when”) is a “no”, then does it bother you if I comment?

    3. Though I myself am not an academic (I seem to be allergic to institutions)… I do have many ties in the academia. I am a Mexican. I have a close friend in the Language department of the UNAM (National Autonomous University of Mexico). I showed this friend your video, as he is one of the people with whom I most discuss language. He wants to know… would you at all be interested in coming to Mexico to give a talk, lecture, whatever? This is not yet at all a formal invitation, step one is to ask you, then, in the case of an affirmative, come the subsequent bureaucratic steps… which are the big nuisances. But it is possible. Of course, the UNAM would fly you, house you, et cetera, during your stay. Like I said, this is not yet a certainty.

    Think it over…

    Much Love,

    -Carlos

  17. We actually… ended up dealing with the “only certain people can be community representatives” attitude in another place recently. Except in our case it was worries that people would attack us for talking about being autistic in the plural community, because then supposedly we’re not speaking for the ones who aren’t autistic, plus the standard misinterpretations you mentioned about how anyone who talks about it at all is somehow assumed to be representing, or claiming to represent, lots of others whom they actually had no intention of even pretending to represent. There’s a huge amount of heterogeneity in that community as well, and ridiculous to assume anyone is speaking for any group besides the system they happen to be part of.

    There’s a huge amount of… control-freaking in certain communities about “who gets to represent us.” And sometimes I think that in some communities, the only person who will ever be accepted as “a good representative” would be a June Cleaver-type. They want A Model, someone who “looks normal” by mainstream standards “except for this one thing” and is considered a high achiever. (Putting aside the fact that June Cleaver was actually abnormal even for her time period, but.) People seem to fall easily into this kind of either-or thinking where they believe that either they have to depict themselves as a model minority, or they’ll never have any hope of being taken seriously at all. Model minority stereotypes are still stereotypes, however, and it’s kind of impressive how people will accept letting a stereotype represent them if they think it’s a “flattering one,” without realizing that that, too, is just another form of dehumanization. The packaging on it just looks better.

  18. Amanda is courageous to go on CNN. It got the principal at my son’s school to say “low functioning vs. high functioning” are meaningless terms. She got it! How amazing is that!

    Amanda’ story has given me fuel to fight harder and smarter for my 10 year old autistic child and for other non-verbal people. Let’s not forget the older teens and adults who were left with the paper end of the lollipop. They’ve gotten nothing. It makes me so mad.

    I ordered 5 copies of “autism, the myth of the person alone” and gave them to people who work with my son. I’ve been searching for more non-verbal people, like them and like Amanda who type/write for communication.

    I watched Amanda on YouTube a few weeks ago, but wasn’t certain if she was for real. I saw the CNN clips and know she is for real now.

    Thanks for letting the world know that angels are among us.

    Brandy

  19. You are what you are, and don’t let anybody box you in. If God cannot be boxed in, neither any of His created beings can be boxed in.* Especially when the box is connected to an outlet and transmits all sorts of data.

    Like Bern said, even NTs have a hard time with the media.

    Since you are tired and probably needed some recentering time, you don’t have to respond to my missive.

    All in all: You’re great!

    *Coffins and Condos not included. :P

  20. n:
    Thanks for the suggestions- I did scroll through those pages prior to my post, but as I am a new reader, I have a lot of in-depth reading to do.

    Amanda:

    Can you tell me if you know of a text-to-speech program that works on a touch screen? I am thinking that if we started teaching Ernie simple spelling at first – say “c-a-t”- and he could enter the letters on a touch screen, then hear the word spoken, he would make the connection that he could talk to us (in our language). (Yeah, yeah – I know, shades of Helen Keller.)

    I wouldn’t be surprised that he knows many words already as he used to watch “Tree House” on TV for many years. I have always been convinced the words are there, but he doesn’t have the means to get them out. One of the staff at the group home said he spelled “purse” one day before she was going to take him for an outing: he spelled it “p-u-r-s”. That had never happened before but at least three times that we know of in his life, he has come out with a perfectly spoken sentence, correct intonation and everything. When he was younger he could use a string of 5 words, then it was 3, now we are down to one or two. Usually the words have to do with food – he loves hamburgers and french fries.

    There doesn’t appear to be any programs geared to helping/teaching autistic adults. The consensus seems to be that unless an autistic/developmentally delayed person is taught as a young child, it is “unrealistic” to expect any learning, other than “life skills” like washing of hands, brushing teeth, getting dressed. Ernie could do all those things at 3 years old.

    In my eyes the single most important thing a person can learn in his/her life is to learn to read. The drug fog will have to be lifted before anything can be done for my nephew. I can imagine how ill he must feel all the time on all the meds – 7 heavy duty ones. My brother and niece were only on one or two anti-seizure meds and said they felt like zombies.

    Anyway, I shall continue objecting,reading and searching. Thank you for listening.

    Kathy P.

  21. I’m glad you gave the context of Gupta’s question, “You mean you couldn’t just wave your arm to say, hi?” Between his question and the answer they edited in, it didn’t make sense from what I have read about your, known about you. Now I can see what the discussion was really about.

    What I heard on CNN sounded like you saw this person you always wanted to meet across the room and couldn’t figure out how to meet the person. Now I see you DID meet the person, but did so in a way that others might not think you had NOT met (or exchanged greetings).

    I hope when all is said and done you feel it was worth the extreme pressure you were under to be interviewed the way you were, and it was worth the level of (uncomfortable) exposure you got. I think you paid a heavy price, but you explained some important points to the world.

    I really don’t think I could have done it (not that I’m nearly interesting enough for that kind of attention). I would have been shaking, too. I think it stinks that they included the part where you hit your head. I think someone could have taken it out, but didn’t want to. More shots of your dog would have been nice.

    What were you discussing with Muskie (on the CNN piece)? It sounded like she was saying nonsense, but I heard you say, “yeah, right.” or something kind of ironic like that. (You were lying on your back on her couch, I think). Was it secret autistic code? :-)

  22. The time thing happens to me too. I’ll be wandering around my life like normal and then suddenly become convinced that I’ve lost a week somewhere because everything seems like it happened over a week ago. Or the opposite, I’ll find it’s a week later than I think it is, and that I don’t really remember the preceeding week, but think it’s still last week. It’s both rather disconcerting.

  23. I knew the instant it happened that nothing I said or did could make them take the head-banging part out. And so did Laura. That part was just a given, although I still mentioned it just in case.

    She wasn’t saying nonsense, she was talking about how on Second Life part of her camo boots disappeared during an upgrade. Second Life upgrades are notorious for screwing things up as much or more than they fix things, and I’m sure I snarked a bit about that or something.

    Laura and I were actually having immense trouble with the requirements of the filming. We kept being told to ignore the camera crew, but we were trying to explain to them that autistic people are among the people least wired to ignore things like that. Laura kept trying to talk to them. And then also reminding me that we shouldn’t gossip about anything we didn’t want on national television… :-)

    Then I think right before the interview, she was lecturing me quite extensively on what happens to people who expose bare skin in the weather I was in. (I had taken my jacket off to sit on at the dog park, and part of my back and butt were exposed and my staff had kept trying to pull my shirt and pants over it which I found to be a nuisance, so Laura was trying to explain it wasn’t actually as much of a nuisance as frostbite would’ve been and that not feeling it didn’t mean it couldn’t happen.) I wish they’d actually pointed out who my staff was, come to think of it, instead of showing her all the time but not really saying anything about why she was around or what she was doing. (They didn’t show her much in the first night but showed a lot of her in the second, including at the dog park.)

    And Laura was also involved in explaining a lot of things to me or to Dr. Gupta during the interview, but because of the camera angle they didn’t include anything she said, even when it was more coherent than what I said.

  24. Brandy said” Let’s not forget the older teens and adults who were left with the paper end of the lollipop. They’ve gotten nothing. It makes me so mad” I remember reading several years ago about a group of people who had been labeled mentally retarded and how they were trying to get others out of institutions especially those who were nonverbal. I havent heard anything about that since. Is there a group that is working with adults who have been labeled -are nonverbal-and are in group homes-institutions etc ? I am thinking specifically of those who are advocating to get them communication systems or at the very least to insist that they be tested again by the right professionals. i.e. by those who really believe there is “someone inside”.
    Amanda I know it was tough for you to be on CNN. There are more than a few people who refuse to go on TV simply because everything they say can and would be used against them. But at least its helping to change attitudes and lives. If nothing more it gives an opening for those who know people who can’t speak to explain that “yes- there IS someone inside who can think and communicate”

  25. Kathy P.
    Can you tell me if you know of a text-to-speech program that works on a touch screen?
    The other day, due to people’s questions on this blog and also in offline life, I had asked Amanda where on what website was there a good list of all the good AugComm or whatever machines and she wasn’t sure where there was such a list that she knew of. Probably not on autistics.org, then.
    What I was trying to do, and didn’t finish doing, was to do a google search of “aug comm” and other synonyms, and find out all the companies that are making those. It will take a while.

  26. Dynavox has a good touch-screen device. I’ve just tested the new Dynavox VMax and it looks really cool (is probably what I’ll end up getting as my next device), but there are tons of others too.

  27. Amanda, I’m just glad that my fielding a few of the questions seemed to help, especially at a time when you were already overloaded.

    For whatever its worth: I think there are probably three main reasons why strangers ask invasive questions (sometimes one, sometimes another, sometimes a combination of two or more): one, as you’ve noted before, some people do seem to mistakenly believe that personal boundaries become thinner or disappear when a person has a disability, but especially cognitive disabilities; two, people seem to think that celebrities and other public figures have no right to a personal life whether or not they’re disabled (think papparazzi); three, some people are just obnoxious generally. Being in the public eye, unfortunately, does mean that the purely obnoxious sort are going to be among the people who notice you.

  28. I think some people also just get so enthusiastic to find things out that they forget what it’s like to be on the receiving end of 50 such questions at once, even if they’d normally notice.

  29. I’ve only just “met” you today and feel so fortunate. I know you will teach me a lot about myself. I didn’t see your interview and can’t comment on that. As for what you’ve written here, it is so rich with profound self-awareness and insights into the human psychology and experience that there’s no way I could do justify to it with a comment. I’ve been thinking a lot about myself in terms of not only thinking, but living “outside the box”. I wonder how many people who have any freedom at all to be who they are really fit into the neat categories our society tends to assign people. It seems like it’s our uniqueness that really makes us alive and helps us wake each other up. In my case, I can appear “normal” a lot of the time. In your case, you can’t. It’s both a blessing and a curse. It’s given you the freedom to speak your truth and it is such a powerful truth. You are an inspiration!

  30. Good point. I guess we can make that number four on the list. I imagine that must especially be the case for parents of kids labeled “low-functioning” who aren’t yet able to express their own experiences. (Or, more precisely, CAN do so but don’t have the opportunity due to lack of appropriate technology or whatever, or can’t do so YET because they’re still too young and still need a few more years to gain more insight into themselves and another few years to figure out how to connect those insights to means of communication that their parents will understand). They get desperate for help from anyone who they hope will help them “understand” their child so they glom onto the first reasonably articulate so-called “low-functioning” autistic adult they find.

    As someone who was born deaf, I’ve spoken at a couple of conferences for parents of deaf children about “what it’s like to be deaf” … and as someone with attention deficit disorder, I’ve also spoken at a conference about “what it’s like to have ADD.” I didn’t get nearly the same sensation of vultures circulating over head waiting to leap down and devour my every past experience that I suspect that you probably have. I suppose this is partly because I haven’t been nearly as “public” as you (though I’ve had my own experience with the media) but maybe also partly because the Deaf/deaf community seems to be older than the autistic community (at least in the United States) so it may be easier for parents to find deaf adults than it is for them to find autistic adults, so the burden is spread around more. For one thing, there seems to be better awareness that there ARE deaf adults out there who are capable of expressing their own experiences so parents know to go looking for them much earlier. And, at least in the United States, there seems to be a better relationship (not perfect, but better compartively speaking) between associations for parents of deaf kids, and organizations run BY Deaf, deaf, and hard of hearing adults than the “relationship” (or lack thereof?) between parents’ associations and those run by autistic adults. So it’s also easier for parents to find deaf adults that way.

  31. The paragraph where you list Jim Sinclair, Donna Williams, Kassiane, Dawn Prince-Hughes—I thought it gives a good sense of how autistic persons can’t be fit into “tidy categories,” and the paragraph afterwards.

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  33. Amanda:

    Thanks for the reply. I watched the intro for the Dynavox VMax. Wow -that is quite the machine! I was thinking of something less complicated to begin with and bigger physically. (One of Ernie’s roommates throws things.) Initially. I thought a full-sized touch screen monitor could work – better even if we can find text-to-voice software. I vision the alphabet on the screen (big letters) and flash cards with pictures/words; get Ernie to touch the letters on the screen and voila – a word is heard. Nothing too fancy at first; if he is totally not interested in spelling, then maybe the other route – pictures of common requests on the touch screen with speech “attached”. (You’ll have to excuse my lack of technologise!)

    Another reason I am thinking big is that I don’t know about Ernie’s vision; even though he had glasses prescribed. I know the optometrist just guessed at a prescription. Ernie ripped the glasses off 2 seconds after they were paid for, then wore them a couple of times for half an hour or so at the group home. Haven’t seen them for a year or so.

    His attention span is practically nil; possibly all the meds give him a constant headache and just “looking” hurts. He isn’t interested in looking at books or pictures anyhow. I thought if we had a computer on for him at his group home with the most common pictures/words/actions displayed all the time and he got the connection that he could “talk” with the help of the device, he could move on to a more sophisticated machine. I know for certain that if we had a picture of a big, juicy hamburger on the screen and he touched it and it said “I want hamburger” and someone actually made him one, that would be a pivotal point. The Helen Keller moment.

    I don’t use this hamburger example to imply that Ernie’s understanding of vocabulary is infantile – because it isn’t. I would program in “I want hamburger right bloody now” if I didn’t have to be politically correct. He understands everything said and could probably reply in adult terms with some help. Right now, when we go to visit, he just says “hamburger, french fries”. I don’t for one minute believe that he only has the mental capacity of a 3-year old, like his so-called diagnosis says. I would be lying if I said I wasn’t afraid of what he has to say to all of us.

    Previously I had been looking for helpful information via the topic “facilitated communication” and kind of hit a brick wall. From your site I learned that I should be looking under “text-to-speech”. Hey, a person is never too old or too smart not to learn something new every day. I will sign off now – this is your site after all and people want to talk to and listen to you. Before I go, I want to compliment you on your writing style; as much as your vast knowledge amazes me, I love your sharp wit and humour tempered with just the right amount of sarcasm where needed. AHHHHH – The beauty and power of the spoken/
    printed word!!!!!

    Kathy P.

  34. You have done a good thing in speaking out. It has touched a lot of people and made folks aware that people with autism are really “there”, despite their outward differences. You are right when you have said that people with autism are perceived to be non-people because they communicate differently.

    I admire your bravery, if it was me on CNN I would have been vomiting out of sheer terror. I bet they would edit THAT out.

  35. Good aug com links are lburkhart.com, AACIntervention.com, http://www.augcominc.com/articles.html. Closingthegap.com is a web community based on augmentive communication and has an excellent newsletter and forum. They do a huge, international assitive technology workshop in Minnesota each October.

    Dynavox and the Vanguard systems are two excellent dynamic displays (interactive screens). You may also want to look at a Tango, by Ablenet. If you are looking to start with simple, try something like a Tech Speak, where you record the speech in yourself, and the user presses corresponding buttons on the overlay. A Tech Speak is MUCH cheaper than a Dynavox, Vanguard, or Tango. I often use them as an intro to voice output. Once the learner can indicate that they do not have the correct overlay they need, that is a good indicator they are ready for dynamic displays.

  36. Great post.

    You’ve mentioned more than once that you are able to perceive things non-autistic people don’t perceive. I would love it if you wrote more about that one day. Do you think that non-autistic people could perceive some of those things if they tried (for instance, if a few non-autistic people had to function in a society mostly populated by autistic people, maybe they would try really hard to perceive and respond to the same things as the autistic people around them, and perhaps have some success)?

  37. It’s amazing that you could understand what I wrote above… good grief, anyway… I went back and listened to the part where Muskie was talking and then I could hear something like:
    “The camo boots..”
    “GREAT”
    “eight of ’em”

    or something like that.

    Before it was a bit like Muskie was saying, “ababbo boo” or “abammo moo.”

    Is there a button on your communicator that tells it to give a word a sarcastic inflection? “GREAT” sure sounded sarcastic to me, or I was just projecting.

    Also, are you feeling better? I hope so. I’m glad to hear you got those air cleaning gifts.

  38. I think she was saying “ate ’em”, not “eight of ’em”. She never had eight, only two, and the Second Life server apparently ate them.

    There’s no button for a sarcastic inflection. I’ve gotten used enough to the voice, though, to be often able to gauge what inflection it will use and choose words accordingly though.

  39. marie: I am totally unable to indicate I don’t have the right overlay, or to change overlays (even the flipbook kind), on a static-display device (I have a Macaw (Macaw II), a Pocket Go Talk, and a Speak To Me (I can’t find a link to that one anywhere, it’s a cheap device with about 12 to 16 buttons and only one level)). If I were to wait until I was able to do that, I’d never be able to use a dynamic-display one.

  40. It makes total sense that autistics aren’t some sort of homogenous group. Of course that one person who is autistic cannot speak for or even necessarily understand all other autistics. I’m sorry that so many people expect you to become THE PERSON who will explain their autistic child, sister, brother, or whatever the case may be, to them. It is almost stupid to think that any one person could or should have such insight into completely unknown people. But please be patient with us. The pleas for help and insight come from a place of desperation. People want so much to communicate with their autistic loved ones that they don’t realize that autistic people are as varied and diverse of those who are not autistic, and that every person, relationship, and path of communication is a unique thing.

    I was also struck by your statement that people want to put you on some kind of spiritual pedestal. I wonder why we do that. It reminds me of stories of primitive people who upon first meeting the white man, with all his accoutrements of civilization, simply assumed that these white people were an incarnation of the gods from their myths. What is unknown is so scary to us that we tend to perceive people with these unknown traits as godly (whether rightly or wrongly) and sometimes even as evil (depending on how much they scare us, I suppose).

    But I will say this about spirituality. I do think that it is very easy to make assumptions about and pigeon hole people who are different. We think our way is the right way, the only way, and that if you can’t fit in or adapt, there must be something wrong with you. And I think that it is fantastic that you are teaching us that this kind of thinking is simply wrong, and that people are what they are, and that they should be allowed to be as they are. And by learning about you and communicating with you, we are learning to challenge all those wrong-headed assumptions about people who are different, and by doing this, we expand a little, grow a little, and maybe, just maybe, become a little closer to God, who cannot be pigeon holed or classified or restricted in any way, because he is everything and all encompassing. I think that is really quite wonderful. And please, don’t feel any pressure to respond to me. As long as I’m not bothering you by the nonesense I write, I am happy just to read what you post. Thanks.

  41. What you describe about waking up after stress and feeling entirely different–that has happened to me a number of times. The way I think of it is that the landscape or geography of my dreamworld has changed entirely, so when I wake up, it is as if I just came back from an entirely different place. (Sounds a little Jungian, come to think of it, doesn’t it?)

    I read through all of the comments from your earlier post after the CNN publicity. It must be tough having people view you as the representative for all autistic people, given that your message is about diversity. But I also see a lot of positive stuff in the responses. You have really got people to thinking.

    –Eleanor–

  42. I panicked a bit when I finally dragged myself over to the CNN story page and saw that “Ask Amanda a question” option. (I presume that was someone else’s idea.) Not to confound questions with a question, but how on earth is all of *that* being fielded, or is it just hanging in cyberspace hoping people will wander over here and do some of their own research?

  43. Claudia said: The pleas for help and insight come from a place of desperation. People want so much to communicate with their autistic loved ones that they don’t realize that autistic people are as varied and diverse of those who are not autistic, and that every person, relationship, and path of communication is a unique thing.

    I think some of them probably DO realize that autistic people are as varied and diverse etc., but to paraphrase what Amanda said in #35, people forget all of that in their desperation to get an answer that will help their loved ones NOW.

  44. “I think some people also just get so enthusiastic to find things out that they forget what it’s like to be on the receiving end of 50 such questions at once, even if they’d normally notice.”

    Yeah, I think that’s it for many people, especially parents. They spend all this time with their kid periodically asking themselves questions about the kid’s disabilities that they can’t answer (eg why is he flicking his fingers in front of his face?) and then they meet an autistic person and they think “here’s my chance to find out these things” and feel this pressure to get the answers once they have the chance, and it kind of drowns out considerations of privacy and comfort of the other person.
    Personally, I don’t mind being asked personal questions. If I’m willing to admit it to myself, I’m fine with telling all sorts of people about it. I used to tell everyone, right after meeting them, that I had been sexually abused, but after meeting some creeps who became interested in a sexual encounter as a result of that, I’m a bit more cautious.

  45. … “but after meeting some creeps who became interested in a sexual encounter as a result of that…”

    That IS seriously creepy :-(

    As for the rest of Ettina’s comment: yeah, that’s what I was trying to say in #37 above, except I think you said it better and more concisely.

  46. Ballastexistenz:
    If you had a button on your static display device that said “its not on this page” or “not here” or something to that effect would you have been able to indicate you needed a different page? That’s how we’ve tried to work that for some of the persons I’ve worked with.

    In my state, in order to get MA or private insurance to pay for high tech devices such as a Dynavox, you have to indicate and show data that you have tried a variety of lower tech devices, to demonstrate that the device is necessary. I’m lucky in that the program I work in has a variety of devices available for trials so we can experiment to see what works.

    Also, on the Tango device (dynamic display available from Ablenet) you can change the inflection of the voice to indicate things such as shouting and whining.

  47. I’ve tried a wide variety of devices so it’s been pretty easy for me to prove that they aren’t working for me. The main thing is getting all the right paperwork in the right places, at this point, and making sure I have all the right equipment chosen (right now I’m at the stage of trying to choose switches).

    I forget, entirely, that there are other pages. I have a “not on this page” symbol and never use it. One of the things I’m going to get funded also is training in using the dynamic-display thing. I was trying to explain to the guy, I need to get it into motor memory, because I can’t rely on abstraction to carry me through things like this. I’ve gone hungry before because the food was on the other side of a refrigerator door or a cupboard, and I didn’t notice it was there. There’s a real barrier for me cognitively with the existence of things I can’t see. But I can also sort of wear trails into my brain in a more motoric way and that’s what I’m hoping to achieve with training on this.

  48. Ballastexistenz:
    When I asked about the “not on this page” button, I meant, in the past, when you were trying different devices, would having such a button made it easier for you to indicate you did not have access to what you needed, thus facillitating faster proof that the static displays were too limiting for you? If not, how did you indicate static displays didn’t work for you? I ask that, as I am always looking for ways to improve our ability to match device with user, given what I have to work with in terms of getting approval for long term device purchases.

    If it helps, I work with young children, and often have difficulty with convincing families, and insurance companies that a voice output device is appropriate, as they would rather the kid use verbal language. I personally feel that people should communicate with whatever is comfortable and efficient for them.

  49. Ballastexistenz:
    If you don’t wish to discuss your Aug-com needs, I understand. I have an obsession with technology and figuring out solutions, so I will be pondering this for some time.

    Question: On the variety of devices you have tried, has there been any consistency with symbol placement or use of a Goosen’s style color coding system (http://www.connsensebulletin.com/cor80202.html about half way down the page)? It may help with the motor memory aspect you are looking for. I haven’t tried the DV5 yet, but on the older Dynavox’s the “switch page” button is almost always located in the same spot (bottom right corner). Think of it like how all the keys on computer keyboards or typewriters are always in the same configuration (asdf…).

    Thanks for your time. I really appreciate your insight.

  50. If there were such a thing as a transparent/see through refrigerator, would that help any? (i.e, so the food would be visible though still on the other side of the door)?

    My partner and I have several clear plastic drawers for storing various things in our home (we have tons of clutter and never organize it well; these drawers are so we can pretend that we are actually putting things away, and so we can still see where things went to). Would that sort of thing help for non-perishable foods?

    Okay, sorry to be asking questions when you already have more than enough to deal with — of course feel free to ignore. But seeing this here made me think about how architecture and “universal design” accessibility currently seems to be mostly limited to wheelchair accessibility and maybe a little bit accessibility for blind people (braille in the elevators) and a bit for deaf people (strobe light fire alarms) … but there isn’t yet a comprehensive view of all the design features that ALL people would find desireable. e.g., with signing Deaf people, we like things like large windows that lets someone on the inside communicate with someone on the outside (since, with sign language, we only need to SEE each other–a window doesn’t *block* communication for us, it *enables* communication). I suppose part of the problem is that there isn’t enough dialogue yet for less obvious design needs.

    Ok, more than enough blathering from me.

  51. Hi Amanda

    I’ve followed your videos on youtube for a while. I’m a reader over at Autism Diva, and my wife is an elementary school teacher who works with kids on the autistic spectrum. Disability issues in general are also of interest to me, as I have a degenerative muscle condition that has rendered me quadriplegic.

    People love to ask me personal questions as well. Sometimes I think the wheelchair is a whackjob magnet. Most of them mean well, but some cross the line, asking me how I use the restroom or have sex, etc. I think they’re just overwhelmed by curiosity. My wife and I both get the spiritual pedestal effect, too. She deserves it far more than I do.

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  53. As a casual observer who knows almost nothing about Autism, I saw you striking yourself as a sort of “erasing the chalkboard” or internally rebooting. Don’t overthink the piece– I do believe your arrow hit its mark.

    I’ve been poking along a little in your blog since the piece aired, as I was captivated by your message. Not in a freakshow sort of way, though. I guess the best way to explain it is this:

    There was a story in the paper today about a woman who awoke from a seven-year-long coma. She communicated with friends and family. Then, a few days later, she slipped back into her coma. There are a million questions I’d have asked her about the years she spent in her coma– if she could understand me or if she had tried to communicate in some way (and if so, how did she try to communicate).

    I think that story is relevant, because your story totally enlightened me to the idea that an autistic person’s lack of recognizeable outward communication in standard format does not mean that the person is incapable of higher-order thinking. The disconnect is simply between expression of thought using socially-accepted format (and not a complete lack of ability).

    I consider myself enlightened as a result of the news piece.

  54. Hi Marie (#43) & Kathleen (#44) –

    Thanks so much for your replies to my queries re text-to-speech devices. I’ve been looking up info on the Dynavox that Amanda talked about and on Tech Speak and J Talk that you two were kind enough to tell me about. Yikes! I should have known that I couldn’t just find some software, install it on the hard drive and voila the touch screen monitor could magically become a teaching device . . . just kidding – life could never be that simple.

    Kathy

  55. Amanda:

    I had been re-reading some of your entries about the CNN interview and just asked one of my daughters if she remembered you giving yourself a few little whaps in the head “on air”. She said “yeah – but I do that to myself and I’m not autistic”. The funny thing is, even though I watched the whatchamacallit (segment) on TV, I don’t remember the head whapping – just how fast you could type and how quick and clever you must be to be able to think and type that fast.

    Although I am still relatively new to your site, it is my opinion that you are an intellectual and a perfectionist; add a little autism into the mix and girl, why wouldn’t you give yourself a whap or two? Mayhap (I like that word) your sense of time fragmented because you are working much too hard trying to educate, advocate, explain things to everyone who is asking and not asking you questions, etc. Perhaps you feel obligated to do these things NOW so they will be done. You can do all these things in your own time, when you feel like it – you are really young and have lots of time and by God, with the speed at which you type, you definitely will get all those words out!

    I hope I am not saying things that have already been said to you a hundred times – I haven’t read even probably a tenth of your postings yet. This thought came to me when I saw your video “In My Own Language”: the hand movements looked to me like you were reading energy or sound waves (my analogy is you seemed to be feeling the energy waves – like reading Braille – or something). I don’t know what you or the people who read and write on this blog think about the theory of the Universal Consciousness of the World (heck,I don’t even know what I think about it) but I found it comforting somehow to think that might be what you were doing – tapping into the Universal Consciousness. It was, to use the old hippy term, “cool”.

    That’s enough of me for tonight. Peaceful,happy, relaxing thoughts to all.

    Kathy

  56. I doubt it. The time thing is related to how much information I have to deal with at once and how much stress I’m under, not as far as I know to what I think my obligations are. It happens all the time, actually, but under normal circumstances (less stimulation, and/or less stress) it’s less dramatic and spaced more widely apart.

  57. I believe the reason that people feel they can ask you questions and assume you will answer them although you do not know them is because of your willingness to educate the masses. It is a gift to many and is greatly appreciated. After seeing your amazing abilities to communicate people want to know how to teach their child the same things although their child may in fact be completely different than yourself. Perhaps a general post on some suggestions to teach a classified “low functioning” autistic with similar behaviors might elievate some of the specific questions received. Again, I am also one of the many that do not know you personally and apologize if this seems intrusive but have noticed many desperite parents looking for a glimmer of hope. The video you produced opened the door for hope that may have been lost in the general population.
    Thanks for reading and I hope that this may shed some light on why so many people seek your input.

  58. Amanda: “I know few other categories of people who, because of being educators of any sort, are expected to answer detailed personal questions.”

    Exactly.

    This is quite an issue, actually. Not only are we expected to answer intensely personal questions, but we’re also expected to do it (and other things) for nothing.

    I was asked, prior to my appearance at a seminar in Turku, for details of my seminar talk (I was presenting the results of my research from my M. Ed. thesis). I did mention to the guy concerned that other than what was being presented would need to be asked in consultation and I sent a list of my service fees.

    There has been no consultation yet, even though he sat for a good half hour and was delighted with the results from my research.

    Apparently, being autistic is seen as such a nasty thing here in Finland that even my having a Master’s degree in Educational Psychology can’t cure the simplistic (and utterly bigotted) way of thinking about it as such.

  59. Thank you for making available your video and story. I saw the video last night for the first time. By using Google I located Ballastexestenz, I am so thankful for your generosity.

    I am a high school teacher currently working with a young woman who just turned twenty. She does not speak using her voice; however, some claim that she communicates through facilitated communication. There is one particular woman who facilitates her on a keyboard. The woman grasps her shoulder and Chelsea is able to type very coherent sentences. No one else is able to do this and so the big question is whether it is real or is the woman moving Chelsea’s arm. I have a big question mark about its validity right now.

    I have begged Chelsea to let me know that she understands me when I speak to her. A few days ago, she did answer yes and no when I asked a few questions. In order to point to the “yes” or the “no” see has to grab my hand and then she is able to point to the correct response.

    I have tried very hard to empathize with how she responds or lacks to respond. It is so difficult to understand her though, as you seem to know very well. I cannot tell you how overjoyed I was to see you on the video and then to see you communicate to earthlings using your keyboard. She has some mannerism similar to yours and it meant so much to see and hear you, which affirmed to me that you (and she) are present and aware. It is so hard to know when there is no earthly communication. If she were to finally type a sentence to me and I was confident the facilitation was genuine, well, words cannot fully express the joy I would feel.

    One big problem is that time is of the essence, as she can only stay in high school for another year or so. As I said, I only recently began working with her so I do not have much credibility when voicing my concerns. I believe she could be getting better instruction and help here at school. The support group in the school district thinks Chelsea’s mother has unrealistic expectation for what she is able to do. I agree with them but I know the mother just wants her daughter to be able to do things for herself. I believe the tension between what the mother wants and what the school wants is not helping Chelsea. I am new to the scene but have already voiced my disapproval with the way some things are going. I feel as though I can be of help to Chelsea because I am not afraid to ruffle the feathers of those above me.

    I have droned on far too long. See if this makes sense to you. If I can find someone who lives locally and who is autistic, but is able to communicate with a keyboard like you, might that be useful to Chelsea? If I can contact someone who successfully communicates with a keyboard to non-autistic individuals, that person could interpret for Chelsea and me. Just like an interpreter of foreign languages, that person could interpret for both of us. In your opinion, does that sound plausible?

    Thank you again for being there and sharing some of yourself.

  60. Just a note. No questions, I promise. :) I’ve been meaning to write since the CNN thing aired. You sparked something in me that has lead to mad research and a strong desire to educate myself about a segment of the population that communicates so differently from me.

    Why? (Rhetorical. It doesn’t count.) I dunno. Maybe it has something to do with some past experience or another where I saw injustice done and didn’t feel I participated enough in righting it. Could be a million things. But the fact remains that you have reached me and in me found an open mind, willing heart and thankful soul.

    If you have reached me, you have reached many, many more than me. Some may articulate a response, some may react in quiet contemplation, some may become advocates, some may just remain aware. (obviously some may ask inane, irrelevant and invasive questions, never mind the freakishly obsessed.) But we are all forever changed because now that we “know” we can never go back to “not knowing.”

    As I struggled to refrain from smashing my television this evening (CNN, again, this time Larry King on the Autism Speaks Benefit,) I realized just how profoundly your story, your blog and your links have affected me.

    I will never see autistic people as defective, pitiful, broken bits of humanity again. Never again will the thought cross my mind “what might’ve been.” And apparently, I have little patience with those that do. Never again will I be able to watch a program like that without some amount of anger at the rights of the people we never see, never hear, never even attempt to understand being trampled underfoot in the mad rush to find a “cure” before this “awful disease” befalls one more of our precious children- mostly for selfish reasons that have more to do with imposing an alien set of “normalcy rules in a box” on those who are constructed in a different shape than actually helping with the struggle to survive in a world that isn’t designed for it.

    I can only imagine your frustration if you saw it. I felt enough of my own that I was finally compelled to write to you and tell you. Your voice has been heard and I will never ever forget it. I hope that the world is soon blessed with many more like you who are determined not to be placed on a shelf for display but to actively reach those of us who can hear you and are willing to learn to communicate on your terms, not force you into a mold you neither desire nor deserve. Eventually, there will be no more dark corners for the well meaning selfish to hide in.

    Should my child be the next of the “precious lost,” I can promise you that she will not face the same challenges that your (our) generation had to face. Now I know better. Now I know she won’t be lost at all and will fight to help her find her balance, her OWN way.

    Because of you.

    And if you’ve reached me, and even just a few others, and then we reach a few, and those reach a few…

    It’s working, Amanda. Thank you for your valiant efforts and your courage.

  61. You know Amanda, some of us are simply thrust into the limelight without understanding that world and if we are LUCKY then we don’t love it and then we can use that platform to raise ourselves to some higher space in which we can voice and challenge injustices and ignorance.

    Nothing is easy, not stagnation, not fame, not even simple things like going to the toilet or remembering to eat.

    But some things are worth the struggle.

    And its wonderful to have such a talent in the public eye as yourself.
    You have a remarkable honesty, wit and fierce emotional intelligence.

    And the world needs you and in between your world will always be just yours, never lose Amanda and your own personal space and you’ll be just fine.

    Donna Williams
    http://www.donnawilliams.net

  62. That’s a huge problem, people not wanting to deal with the fact that someone is very rarely only autistic, with nothing else being the slightest bit atypical. It’s caused a fair bit of confusion and guilt as to what we “ought” to say when speaking to people as “an autistic person”.

    Furthermore, even though we’ve tried to keep our public writings “pure”, (i.e. free from both persecuted things like plurality and from much more banal stuff that still counts as “additional differences”), looking back it’s clear that elements of those things have still inevitably leaked through. However, as this has been unintentional and undeclared, the end result from the reader’s point of view is more mixup between autism and other things, not less.

    I think what we’re getting at is that the approach of being open about stuff and getting criticised for not being “purely autistic” is more constructive than trying to self-censor. People have to learn to figure some things out for themselves; the world cannot be fully preprocessed for them and still retain any useful information.

    Hmm, all of this is probably obvious. Sorry for ranting.

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